“Are you BRCA TOO?” – No, I Have a Strong Family History, Which is Just as Important

One of the first questions I’m always asked, no matter what I may be discussing – “Are you BRCA too?”  And the answer is “No, I am not. There is no genetic reason to date that I ended up with Ovarian or Endometrial cancer.”  “Then why did you have a preventative double mastectomy?”  Simple, you can’t always rely on genetics to determine whether or not you will be diagnosed with cancer – family history is as important since only 5-10% of all cancers happen due to a genetic mutation.  I only have a handful of friends in my cancer circle who actually have a genetic predisposition to one cancer or another – the rest of us really don’t have a reason as to why we’ve developed cancer at all – we’re what they like to call head scratchers.

I am a HUGE proponent for genetic testing – currently there is a MAJOR gap between women being diagnosed with ovarian cancer and having had genetic testing done.  I am sure this is true across the board, but am only familiar with the numbers on the ovarian cancer side of things.  If you’ve been diagnosed with cancer, PLEASE ask your medical team for genetic testing – it could help your other family members if you do in fact carry a gene that explains your diagnosis.  I wanted to get all of this out of the way before explaining the why’s behind how 20 months post-diagnosis I found myself in the “previvor” category (individuals who are survivors of a predisposition to cancer but who haven’t had the disease – honestly, I don’t know how I feel about this word, but I’m going to use it).

Between chemotherapy #1 and #2, I had my genetic testing done – at my oncologist’s advice as to what next steps needed to be, if I in fact had a mutation of sorts.  There were several reasons for this – first, my own health, we needed to make sure there wasn’t something else at the time we needed to be worried about me being diagnosed with.  Secondly, if I did have a mutation, we needed to determine what parent it was passed down from, and if my brother had been effected as well.  And lastly, I have two children that I needed to make sure would be okay if they’d inherited something from me.  The results came in while we were on Spring Break and to all of our surprise, they didn’t find anything, except for one gene which at this point in time isn’t linked to anything I’ve been diagnosed with, or breast cancer.   At that point in time, no one in my immediate family (parents, brother or children) had been diagnosed with anything that would raise an eyebrow to make us look at anything outside of us. Okay, so you’re fine…I still don’t get it, then why did you have it done? As I said, I have a STRONG family history of cancer on one side of my family…it will take two more diagnoses before things would start to click.

August 2017, as I’d gotten my drain removed, my dad was diagnosed with non-Hodgkins lymphoma – I made sure at that point in time there was nothing we needed to worry about – anything that changes with my family I make sure Dr. H knows right away.  So dad under went the treatment, responded to chemo with flying colors and he was in remission.  And then at his first three month post chemo checkup this year, he was diagnosed with prostate cancer – I think it was in the May.  It was a mix of low and medium grade and the lesion he had, had made it to the outer wall of the prostate, but had not “escaped,” so he got off VERY lucky.  So, I still don’t get it..no breast cancer.  You’re correct, no one in my immediate family has been diagnosed with breast cancer.

About a month after my dad’s diagnosis I did what I advise more people not to do – I took to Google and typed in “prostate cancer and ovarian cancer”…and as luck would have it, one of the following things I read included something along the lines of women who’s father or brother had been diagnosed with prostate cancer can have a higher risk of developing breast or ovarian cancer, and my stomach sank.  Dr. H already knew all of this was goin on (remember, I tell her EVERYTHING that transpires with my family regarding health related things), and she said we’d talk about it more at my appointment in July and figure out what to do, but I needed to confirm what I’d read wasn’t something we needed to worry about.  So I typed out the following in a text “…I just read that women who’s father or brother have been diagnosed with prostate cancer can potentially have a higher chance of developing ovarian cancer or breast cancer.  What happens to that daughter who’s already been diagnosed with ovarian cancer?”  And shortly after hitting send I’d get a response that included, “but your grandmother doesn’t have breast cancer, does she?” And my stomach dropped again, “yes, 5 times…” “Okay, we’ll talk about it when you come in.”

The plan that we’d originally come up with would be shifted slightly.  Instead of waiting for my dad’s genetic panel to come in to see if something would pop on his if we did a significantly larger number than we had on me, that we might find something (I had 42 genes tested). Instead, she’d recommend the breast surgeon oncologist she wanted me to meet with to discuss options and what my risk might be given all of my history coupled with my dad’s and his mother’s.  You see, my grandmother has been diagnosed with breast cancer 5 times, her mother and her mother’s mother also had breast cancer.  This is why knowing your family history as far back as possible is important! And although my medical team had all of this information, there was one key thing missing at that point in time, which would flip the scale  – all of my father’s diagnoses within a year.

Heading into the appointment with Dr. M, I already knew what my decision was going to be if she told me I was high risk and I knew the chances of her telling me otherwise were pretty slim.  So when she confirmed I was most definitely high risk with the information we had, and the model would under estimate my risk due to not having an immediate family member with breast cancer, I told her I knew what route I’d like to go, and things moved forward from there.

So although genetic testing didn’t necessarily find anything, I think it’s extremely important for everyone diagnosed with cancer or any other rare disease for numerous reasons – to possibly benefit the rest of your family members being at the top of the list.  Always remember to keep your medical team apprised of any and all changes in your family history – had I not, we may not have reached the conclusion we came to for me…and I wouldn’t realize until this past Friday how critical it really was (more to come on all of that). As I always say, use your voice, it’s there for a reason.  A huge THANK YOU to Dr. H for ALWAYS listening to me, even though I know at times I tend to panic, and to Dr. M for allowing me the opportunity to make the decision I did, and do so in a somewhat quick fashion.

 

Okay, I’m Ready: Prophylactic Bilateral Mastectomy – HUH??

Yeah, that was my reaction the first time when they used all of those fancy words – in short, two weeks ago today, I had a preventative double mastectomy, and I wasn’t quite ready to talk about it.  “Wow, that happened fast!” is the response I’ve received from many.  And why didn’t I talk about it before now – because this was my choice. I wanted to do it my way, on my terms only…without any input from the outside world or really, anyone outside of my medical team, to be quite frank.  I went to my breast oncology surgeon and plastic surgeon appointments solo, because I knew what I wanted to do, so there was no reason for anyone else to accompany me – I wasn’t sick this time around, therefore, whole new ballgame.

Initially, before my genetic testing came back in March 2017, we thought I was more than likely going to need to do this when I finished chemo since the chances of me not having a genetic mutation with having both ovarian and endometrial cancer, was pretty low.  BUT, as my luck would have it – the “low percentages” kept in my favor and there was really no genetic reason as to why I ended up with all that I have to date.  So then why?  I’ll explain that in more detail in a future post, but in short, one side of my family history is very strong in the breast cancer department and it took one additional thing happening this summer for me to go from not really a concern “at this moment in time” (a phrase used all to often in my world, I feel), to high-risk.

Sure, I had other options – adding one more set of doctor’s appointments and imaging every 6 months indefinitely.  This is in addition to my regular 3 month appointments and blood draws to check my ca125 and visit with Dr. H to make sure the ovarian cancer was still maintaining N.E.D. status, the ultrasound every 12 months on my thyroid due to a polyp we needed to address and monitor once I was done with chemo, and a polyp in my gallbladder that decided to surface a year ago this October every 6 months – my head couldn’t take one more visit having to hold my breath until someone told me I was “okay” and I could breathe until the next time I had to come back.  More times than not, it’s not that dramatic – but when the worst has happened out of nowhere, it’s kinda the approach you take, and in the in-between, you live it up creating memories and going on adventures to make up for lost time (as you may have guessed, this hasn’t slowed me down much at all!).

So I selected to have this procedure to ensure I had peace of mind with this whole thing.  You see, once you go through chemo and having to worry about whether or not the cancer you have is going to kill you, you’ll do anything to ensure it doesn’t happen again, or at least  that you have the least chance possible of it happening.  I’d have been so angry with myself if I’d chosen to have imaging every 6 months to monitor things and then one day my oncologist told me they’d seen something on the images and we needed to take care of it.

As I write this, I’m feeling really great – bored out of my flipping mind, but really great!  I’m restricted quite a bit this time around – heck, maybe I was last time, but I was too weak and too sick to remember wanting to do much.  Over the next several weeks and months I’ll update about several things – the “why” behind family history, what the procedure entailed (this is COMPLETELY different than a breast augmentation or having had this done because you were diagnosed with breast cancer), things that have helped me post-procedure, how the kids are, and much much more.  Folks, this isn’t a one and done kind of thing – it’s a longer process than I’d imagined, and yes, I will be having one more procedure and then I should be done with this part of things.

*** To those of you reading this who are breast cancer survivors, I would never compare this to what you’ve been through, remotely, just like if you needed to have a hysterectomy due to genetic or family history reasons you wouldn’t compare it to the procedure I had done – it’s not the same.  And for those of you reading this who’ve had breast augmentation, it’s not the same…please don’t try to compare the two ***

International Day of the Girl – They Say Jealousy is Just a Compliment in Disguise

It’s taken me a week to determine what it was that I exactly wanted to say, and how in the world to say it, so it’d come out the right way and not offend anyone.  And today, while scrolling through my feeds on social media, it hit me… I finally figured out to to make this work – today is International Day of the Girl, and when women support each other, amazing things can happen…so what if we took a spin on this in the world of cancer???

Where in the world could she possibly be going with this, you might be thinking.  It’s simple, and you’d understand completely, if you were looking at October through the eyes of an ovarian cancer survivor.  October welcomes all things pink and breast cancer awareness month – as we pass the baton to our sisters in pink, there’s a bit of jealousy on our part that comes along with it.  My close friend Brittany stepped up to the plate on October 1st and offered a suggestion, what if instead of getting our panties in a bunch by the color pink and all things breast cancer related, we partner together for the better of all involved – for two cancers so closely intertwined, in order to create more awareness for BOTH, instead of feeling like the step-sister to the other.

No one should ever be angered by a cancer color, EVER – so I began to think, and is it that I’m angry about the color pink and October…no, I don’t think it is, it’s that I’m jealous.  Jealous??  You’re jealous of breast cancer, the color pink and October??  I am, and here’s why:

  • I’m jealous of the fact that they have a preventative screening test in place, that can sometimes catch this disease in the early stages, and ovarian cancer is only diagnosed in the early stages 18% of the time.
  • I’m jealous of the odds – the overall average 5-year survival rates for breast cancer 90%…the overall average 5-year survival rate for ovarian cancer is 46%…and don’t even ask on the 10-year survival rate.  At stage 1c, which I am, the 5-year survival rate is 84%…that’s still less than the overall average for breast cancer, and I’m STAGE 1C! For the record, I believe in defying the odds..numbers are just numbers, don’t pay one bit of attention to them! It’s a statistic, that’s it!
  • I’m jealous of the fact that in the first 3 days of October there was more publicity on all of the national news stations than there was the entire month of September for ovarian cancer.
  • I’m jealous that most people know what breast cancer is and how it’s detected, and not many women know your annual exam doesn’t screen for ovarian cancer – currently I’m trying to figure out how to reply in an informative way to one campaign going around reminding women to schedule their annual exams by painting your pinky pink – how do I explain that the only female cancer screened for in your annual exam is cervical, none of the others are.
  • And I’m painful jealous of the funding they receive to find new treatment options and research.  In the 40 years since the “war on cancer” has begun, the statistics for ovarian cancer hasn’t changed much at all, like less than 4%, while other cancers have seen a significant shift – which I am so thankful for, for those effected by this awful thing called cancer!

But what if instead of being jealous, I used the feelings I have to fuel something bigger?  Ask me anything about ovarian cancer and I can talk for hours.  Ask me something about breast cancer and I can’t tell you much outside of what the general public knows. I’d say the same goes for women who’ve been diagnose with breast cancer, or any other cancer for that matter – they can tell you everything, but more than likely don’t know much about ovarian.  I guess what I’m trying to say is this – what if the “teal sisters” and the “pink sisters” teamed up?  What if the breast cancer organizations and the ovarian cancer organizations helped inform women not only about that specific cancer, but all cancers that could effect survivors – specifically two that are so closely tied to the other.  Could we, women united, make a difference?  Would the numbers change?  Would more women be more informed about what could happen to them and how to take preventative measures against both ovarian and breast cancer – what to look for, how to take precautionary measures if you have a strong family history of a specific cancer, etc?

So, my ask is this, the same as Brittany’s – “Feel it on the First” is a big movement in the breast cancer community – how about quickly adding on to that friendly reminder, the key symptoms of ovarian cancer: bloating, inability to eat/feeling full quickly, abdominal/pelvic pain, changes in bowels and menstrual cycle, frequent urge to use the restroom (think UTI), along with sever fatigue and weight loss.  We would LOVE to partner on something like this – and if you’re an organization reading this, numerous ovca survivors LOVE to speak and write…not because we’re great at it or it’s in our comfort zone, but because it’s the only way for us to create awareness and hopefully save a life.

I think it’s time we help each other adjust our crowns for the better of the whole, not just a piece – to give each of us a fighting chance against any given form of cancer.  All of our experiences have made us into the fierce women we are, so let’s see if we can’t turn this cancer that “whispers” into a ROAR, TOGETHER!

 “You can tell who the strong women are.  They’re the ones you see building up one another, instead of tearing each other down.” 

Ending Ovarian Cancer Awareness Month With A Bang – I’m A Century Rider!

That’s right y’all, I ended Ovarian Cancer Awareness Month with a BANG, for a DAMN good cause – who would have ever thought two years ago at this time, I’d now be calling myself a Century Rider (I couldn’t ride last year, I’d just had a drain placed)?!?  For the past 5 months I’ve gone from someone who had a bike and literally NEVER rode it, to riding 100 miles in one day, for cancer research through Pedal the Cause  – an organization I was familiar with, but really didn’t know that much about and had no idea it’d become one I’d have a significant amount of involvement with.

So wait, you rode 100 miles in one day?? Yep, I did!  Buy why, couldn’t you have ridden a shorter course?? Yep, I could have…but that wouldn’t have been my style.  So why’d you do it?? Oh that’s simple, by now you should know the answer to that…because I can, because I have a body that although it puts me through the ringer emotionally and physically, that is able to!  Will I do it again??  Ummmm, my immediate response following was “don’t let me do that again, I think I’ll be good with 50 miles next year” and then waking up the next morning and not feeling awful, I’d changed my tune a bit, so we’ll have to see!

“But seriously Randalynn, why did you do it, you could have rode the 50 mile course and we’d still have thought you were pretty bad ass considering all you’ve been through…”  I’ve heard it phrased all kinds of different ways and this will be my response to each and every person – I needed to prove to myself that I still had it, that I didn’t let ovarian cancer knock me down and keep me there, and other people needed to see it too.  I wanted to know that I although I have different struggles now when it comes to training, that I could push through them and succeed. I probably could have started the whole training thing a bit earlier, but coulda, woulda, shoulda…I know better now and am super comfortable on my bike and with the routes available to me to train on. And those 100 miles were a bit easier thanks to my two partners in crime – Kim and Carrie, thank you ladies!!!

This was my first year participating in Pedal the Cause – I had the honor of participating in such a high level, it was overwhelming at times (all good).  Our team was Gyn Onc Teal on Wheels, which I co-captained with my oncologist and friend, Andrea Hagemann.  Our team consisted of 80 riders – survivors, oncologists, researchers, our children, and friends and family, all in it for the same reason, to fund cancer research in hopes of one day finding a cure!  Andrea and I couldn’t have done it without each and every person on the team – Sandi Essner, your south-side team rocks, thank you for all that you did to head that portion up!  To date, we’ve surpassed our fund raising goal of $40,000 and are just a little bit away from hitting our push goal of $60,000 – as a hospital team, this is a HUGE jump from where they were last year, which was what we were looking for.  We were looking for a SPLASH when it came to the gynecological cancer community, and we were able to more than accomplish that, we didn’t go unnoticed this year, we’ve accomplished the following and still have 28 days to go:

  • More than doubled the funds raised – this couldn’t have been done without combining forces and making one larger team (thank you, Sandi!)
  • More than doubled the number of participants – I’m going to have to see how far we can push this number next year! Maybe 100+???
  • Have raised $58,895 as I’m typing this – we are BLOWN away by everyone’s generosity and support, it means more than you will ever know…sometimes we have to catch our breath when looking at the number. We’re currently the #2 hospital team in raising funds.
  • Were asked to participate as one of the Featured Fighter groups, for that campaign, myself and Andrea were thrilled to represent our team and the ovarian cancer community, sharing our story!
  • And three of us have participated in pieces on television for again, not only our team, but to create awareness around ovarian cancer.
  • Oh yeah, and to top things off, our first year having a team jersey, we WON the team jersey contest!!  Woohoo!!! We had some pretty rad sponsors too, that helped make that happen – St. Louis Ovarian Cancer Awareness and Tessaro – THANK YOU!

I am so PROUD of each and every one of us – we pushed ourselves on road bikes and spin bikes, and our little kiddos did a pretty amazing job too — the Kids Challenge was on Saturday, and Olivia, Jaxson, my two nephews (Ethan and Emmett), and my niece (Lilly) all rode on Saturday morning and had such a fun time – activities galore and a fun 20-30 minutes on their bikes – it was so great to see them out there, they loved it! Next year maybe we’ll have a few more friends with us, I was honestly probably a bit overwhelmed by the time commitment to do things properly for the kids portion.

So what can you do — two things really, there’s still time to donate.  100% of public funds raised go directly towards cancer research at Siteman Cancer Center, and Siteman Kids at Children’s Hospital – this benefits not only the St. Louis community, but the cancer community across the country as a whole as they partner with other major cancer centers.  Click here to do so!  The second thing, simple – push your boundaries, step outside of your comfort zone and surprise the hell out of yourself, you’ll be shocked at the things you can do with your able body!

Thank you to each and every one of you reading this who’ve donated – your support means more to me and my family and team than you’ll ever know!

“I Wish I Knew…”

One of the many campaigns going on during September for Ovarian Cancer Awareness Month is #IWishIKnew by the National Ovarian Cancer Coalition – more details at https://iwishiknewovca.com/  And as I thought about what it was that “I wish” about this whole damn thing…it’s probably anything, to be honest.  That I would have known something prior to being diagnosed, because I knew nothing  upon hearing the words “ovarian cancer” except that women died from this disease more times than not – currently I feel like I’m a walking information bank for most things OVCA related (I am NOT an expert, I don’t want to be!).

But what if in my gynecologist’s office, instead of seeing all the options for birth control on the walls and counters, there would have been information on ovarian cancer, or any gynecological cancer for that matter?  The signs, what to look for, that this wasn’t covered in my annual pap smear – Would it have made a difference or would I have just looked past it like I did everything else because this wasn’t pertinent to me at this point time?  Would it have allowed my friends who are currently either STILL in the freaking fight for their lives, one has currently been trying to find SOMETHING, ANYTHING that will work for the last 22 months, others are finishing up and starting treatments for recurrences? These things are something I will never know, unfortunately.

You see, I feel like I’m a fairly intelligent human being and ovarian cancer has made me feel like the complete opposite more times than not – because I just don’t understand how I could have been so completely uninformed about something this serious, this life threatening, that happens to 1 in 75 women.  1 in 75 women seems like quite a lot to me.  1 in 7500, okay, I don’t feel so badly about not knowing…maybe.  I think every woman should thoroughly  understand what they’re screened for, or not,  in their annual pap smear – do you know how many times I was asked when my annual exam was, after I was diagnosed, and looked at like I wasn’t properly taking care of myself when that question was asked??  And then when I would respond with “a year to the date I was diagnosed, almost.  Ovarian cancer isn’t screened for in your annual exam, there is no preventative screening test in place,” the looks of shock on the other person’s face is one you won’t forget…because as luck would have it, they didn’t know any of that information either.  Nor did they know what the symptoms of ovca were.

So what if all the information was given to us, what if there were informational pieces posted in and around our OB/GYN’s offices regarding not only ovarian cancer, but all gynecological cancers?  What if we were specifically told what we were screened for in our annual exam and pap smear – I can’t recall ever having a conversation about this – would it have made a difference in my life or others?  Would I have at least known what ovarian cancer was?

Know the signs and symptoms: Bloating, pelvic/abdominal pain, inability to eat/feeling full quickly, changes in bowels/menstrual cycles, frequently needing to urinate. I also have horrible lower back pain and heartburn like nobody’s business!

Ummm…Where In the World Have You Been??? Good Question, Let’s Catch Up

I know…I said at the beginning of June my fatigue was rough, then I was still exhausted in July, and the trend has continued.  I’ve legit been taking naps after work when I don’t have the children, trying to spin after the naps, during the week, then do my lymphadema stuff, then it’s time to sleep.  The weekends are full of riding, doing things with the kids and enjoying spending time out and about.  So, this has been put on the back burner, for no other reason, then I’m tired and will be honest, probably just haven’t allowed myself the time I need to adjust to this life I now live.

So let’s do a quick Q&A to answer a lot of the questions I’ve been getting, and hopefully we’ll be all caught up and can start fresh, lots going on in the world of Me!

Aren’t you concerned that you’re so tired?  Great question, I was!  I was VERY nervous…because it’s taken everything for me to literally pick my head up off my pillow in the morning for the last several months.  The end of July was my one year N.E.D. check up, but I actually had my blood drawn two weeks prior while at the hospital for my dad’s surgery.  All was good, single digit numbers.  Went to my appointment and the Resident, who I’ve had in the past, said “oh gosh, you checked a higher number on your fatigue level than normal, what are you doing about that?”  My response was “nothing,” thinking that she’d say I wasn’t resting enough or something like that…which wasn’t the case at all.

After I said “nothing,” I quickly followed it with “but she’d (Dr. H) tell you that I need to slow down, I’m working out, training for the 100 mile ride…” to which the Resident quickly stated “actually, the thing we recommend for fatigue is exercise, so you’re doing the correct thing.”  I’d say the level at what I am currently training at though, is causing a lot of it…6 more weeks and then I plan on taking my weekends without the kids to relax a bit and see if that doesn’t help a little.

Oh my goodness, your Dad had surgery, what’s going on??  Yeah, I think a bit of stress is coming into play with a few things as well on the fatigue front, this being one of them.  My Dad was diagnosed with prostate cancer right before his first 3-month post-chemo check up for non-Hodgkin’s Lymphoma – not something any of us anticipated.  After having the biopsies done to confirm he had a high concentration of mixed grade prostate cancer, with one lesion, he decided on surgery to treat the issue…but being my Dad, he wanted to make sure it was done according to the schedule we had in place for the summer…which meant waiting until after the vacation we had planned with the kids, and getting it done just in time for him to be able to walk with me at the PGA Championship the first full week in August.  Everything went really well, his first post-surgery blood draw was great, normal levels, and he’ll continue to have his levels checked every 3 months for the first few years, then taper off to one time a year at the 5-year mark.

Any big plans for Ovarian Cancer Awareness Month?  I know the answer to this should be ‘yes,’ but I’m heavily involved with Pedal the Cause at the moment, and I didn’t calculate in my head how much time I’d need to dedicate to both.  So the answer is ‘maybe’…be on the lookout, it won’t be anything too grand, but it will be enough to create the awareness I’m looking to achieve.

How are the kids? Olivia and Jaxson are FANTASTIC!  Jaxson is now in Kindergarten at the same school with Olivia and although he tells me he doesn’t like it, I think he really does…because he has a huge smile on his face every day I drop them off as he’s waving good-bye, walking up the sidewalk.  I will say this though…they remember all that was 2017, probably more than I’d like for them to.

I fell and hurt my hand a couple weekends back and I said something like “I think I broke my hand” and Jaxson started crying… he asked me if I’d have to stay in the hospital like before, for how long and would he not be able to touch me like that ‘one time’ – that ‘one time’ was a long recovery period from back to back surgeries, where they’d have to sit in a chair next to me, until we finally got to the point that they could sit in my chair with me, just not in my lap like they once were used to.  To be honest, I still can’t have them sit on my lap too long without having a bit of pain…it’s just the way I healed, and I hope with time it gets better.

Outside of that though…you’d never be able to tell we’re any different than any other family of three walking down the street, smiling and laughing

What is Pedal the Cause?  Hang tight on this one, I have a big post coming on Sunday for this one and I’ll answer all the questions you may have any more!

 

My goal is this going forward: 1-2 posts a week, some will be about me, some will be about life, and some will be about others. The long period of time without posting isn’t something I plan on doing again any time soon…I just need a bit of a break, I think that happens from time to time.  And on that note…go and enjoy the weekend, make memories and laugh!!!

June 5th – One Year Later…

Top and Bottom Left were last year – we celebrated his big day, #4, the day before and while Olivia and I were holding up 6’s, he was representing his b-day! HA! Top and Bottom Right were today and yesterday – we made it a full year, all in one piece, things getting much better, although coincidentally I looks a little tired in both of the top photos – LOL, so is the life of a mom!

 

June 5th represents a couple things for me – the day my youngest was born and the my last day of chemo – two fairly significant things in my life to date.  I still can’t believe it’s been one year – it has been ONE FREAKING YEAR since my last chemo treatment!!!

Some days it seems so long ago, and others it seems like I just walked out the door.  Jaxson was turning 4, now turning 5, and while Olivia was off to swim team practice with my mom. My dad went with me to the hospital, and we went about things just like normal, but what I thought the last treatment was going to feel like wasn’t what I’d expected at all.

The words from my nurses went from your “last treatment” to your “last scheduled treatment”…wait, what???  The thought had never crossed my mind that I may actually have to do this again.  We went through the entire process just like we had in the past – I did all the necessary things I would have done had I been coming back for another treatment.  I think in my mind I saw myself  walking out of there with nothing – no post medication, no “boyfriend” attached to my arm (Neulasta), I’d just feel like crap and figure out how to deal with it.  So, because of those words and because we were proceeding like we had all the other times, just in case I’d need another round, I didn’t ring the bell…I didn’t want to, I was afraid I jinx myself.

Wait, you didn’t ring the bell??  No, I didn’t.  While most of you have celebrations from your last day of treatment, I walked out feeling like poo (I did not tolerate carbo/taxol really well), got in the car and assumed my position in my chair, praying the nausea wouldn’t be quite as bad this time around.

“But I don’t understand, why you didn’t, you’d finished your scheduled treatment, you made it to the finish line” – yes, I had in fact done all of these things.  But, the fearless person I may come across as, wasn’t so fearless in this moment.  I was scared to death that if I did anything symbolizing I wouldn’t be having any additional treatments, I would ruin everything and my labs and post chemo scans wouldn’t come back good.  I wasn’t in a place to “celebrate” finishing something that was scheduled – I hadn’t gotten to the place where you celebrate everything…let me repeat that, you celebrate EVERY(!) SINGLE (!) milestone that is a completing something  or good news, regardless of what may still be in front of you.

One year later I can tell you that I would have rang the bell that day, instead of waiting until I got the all clear from my scans and labs.  I would have smiled as I walked out of the room that day, knowing that I’d accomplished the huge task Dr. Hagemann had given me – I made it, I completed all 6 rounds of treatment, on time, without too many obstacles (despite feeling awful the majority of the time), with the kids still all in one piece.  You see, I hadn’t just made it, we’d all made it – this wasn’t just a challenge for me, it was a challenge for them too.  We’d proven that life may throw you something totally unfair, but with the support of our friends and family we were able to make it through with flying colors, because hard crappy things can be done!

Towards the end of July I’ll have my one year N.E.D. appointment – it’s kinda crazy to look back and think about all that has happened since June 5, 2017 and now.  I’ve gone and hiked miles upon miles when there were some days I could barely make it down my hallway to the bathroom.  My hair is growing back (yes, I just cut off quite a bit if you’s noticed – my hair is growing back super strange and is very coarse and I still had some dead parts).  I’m back at work – started part time and then gradually made my way to full time.  And as time has passed, routines are getting back in place.  And yes, I still have days where I cry thinking about all that happened during those 6 rounds of chemo when I think back – it’s what kept me alive, but it wasn’t the most fun thing I’ve ever done.  In fact, it was down right terrifying.

HAPPY BIRTHDAY J-man!!!

Grand Canyon Rim2Rim – Part II – But, Why??

Starting out at the North Rim – I’m a very little way down at this point. You actually start the hike on the north side in a little forest of sorts.

 

And my response back would be “…but why not…”

Multiple times I’ve been asked why this, why is this what you chose to do?  I feel like everyone is looking for some profound response, like I had an epiphany or life changing event (yes, I get it, I did!) that caused me to choose this, but what if the only reason I did this was because I’m merely living my life, doing what I want to do?  Would that answer be good enough?  Because it should be, without a doubt, reason enough to do this and everything else that’s on my “list”.  And no, please don’t call it my “Bucket List” – in my head that implies I’m doing things because I won’t be here – for me, it’s my “Live Life List.”

So for those of you wondering why I did this, why something so big and so bold, it was because I merely went down the list of things I have down that I want to do, and this one just happened to be the one I picked.  I didn’t do this for anyone but me, and my three friends who joined me were just as crazy and didn’t think twice about me doing it – okay, maybe they thought twice, verbalized any concerns they may have had, but knew that if I said I was going to do this, they had to let me do it. It’s a mutual unspoken respect we have for each other – supporting the other.   And, let’s be honest, a part of me really wanted to do this, to prove that I still had it in me to do extreme things.  Knocking this out gives me the confidence to try just about anything.

What I wish people would have said prior to me taking off on this adventure, was how proud of me they were for trying, that this was going to be one for the books, or doing this was going to be one heck of an accomplishment considering where I was at this point in time last year…but not many did.  Most were still concerned about my wellbeing, making sure I realized what I was actually trying to accomplish, and overlooking the fact that for the last 5 months I’ve been busting my butt so I would be able to do this. Some said this was going to be an amazing trip, but you could tell they were still hesitant about the entire thing.

Here’s the deal – I can’t go out like the normal person who’s in great shape and do a normal training schedule, I have to make sure that I have an extra month or two in order to be in the right position to do things of this nature.  The things I need to do are a little different as well – I incorporated a lot of HIIT and Tabatta workouts in order to try and increase my lung capacity – cardio is hardio, y’all.  Remember, I’ve said it feels like someone is standing on my chest while doing high intensity workouts, I’m not sure that feeling will ever will go away fully.  And, as I found out, I have to keep in mind that my large joints will only allow for me to go so far, for so long, without reminding me of all I’ve been through, and that’s okay(10 days later and I FINALLY got some relief in my knee joints!).  It’s why I’ve been cycling indoors throughout the winter, not only for this, but so that when I hit the road next weekend to start my training regimen for my 100 mile ride for Pedal the Cause at the end of September, I wouldn’t be starting at ground zero.  The normal training schedule would have me starting in July, pretty hardcore – June will be my buildup, so I’m ready for that as well.

So for those of you who’ve been worried about me doing the 100 mile course on September 30th, completing the Rim2Rim of the Grand Canyon should reassure you that I’m going to be okay – yes, I know what I need to do in order to not only complete this, but complete it in the time I’d like to.  I enter everything like this with a bit of nerves attached – if I didn’t, it means I wasn’t fully aware of the amount I’d bitten off to chew, and I am, which means I’ll be fully prepared.  My hope, is that by sharing all that I do, big and small, others will know they can do hard things too no matter what their situation in life may be.  Go and do the things that might scare you a little bit – more times than not, the reward will be worth it!

Grand Canyon – Rim2Rim – Part 1

View from the South Rim the night after completing the Rim2Rim

I survived and am home! Sooo, how’d I’d do, did I complete what I set out to do??? Yes and no…and I’m a little disappointed, but extremely proud of myself for completing my first Rim2Rim…yep, you read that correctly, I’m missed the hike back up to the North Rim. I’m sure some of you who follow me on social media wondered “what happened to the other 2R.”

Sedona – Broken Arrow Trailhead

Who all went, how’d the day go, would I do it again, let’s get to the good stuff! Wednesday morning myself, my friend Kim, Mandi and Brittany all met up in the great city that is Phoenix (although I think Scottsdale may be more my speed if I’m actually staying in the area), and headed north, making our first stop in Sedona for a hike and some fantabulous food, then it was off to the North Rim, where we’d stay in Page for the evening.

Top of the North Rim

At 5:30am on Thursday morning, 29 degrees, we all headed out together, down the North Rim, with our sights on the South Rim. Many of you wondered how Brittany made it on the hike less than 36 hours after treatment – that girl is amazing, and went 5 miles in with us…a strenuous 5 miles in, at a steep grade down. At Roaring Springs Kim and I would say our goodbyes and be on our way to the other side, and she and Mandi would start their way back up

To try and explain to you the colors, the variations of terrain and vegetation as you descend in and across something this massive is something I will never be able to fully convey – I was in awe at every view along the way, one bend was more breathtaking than the next.

We knew what to anticipate, where we needed to be to each point by and we may have been a little behind schedule due to the photos we kept stopping to take along the way. Every hour we’d stop to eat one of our quick energy bites/chews/blocks and chug a hydration or performance mixture of fluids – I’d researched what was mandatory in order to make this a success.

13.3 miles in we’d find ourselves at Phantom Ranch, it was about 92 degrees at this point. the only place to stay on the Canyon Floor. I’d read I could do a little something fun for the kids from this location, mail them postcards that would be delivered to the post office by Mule (this is the only way to get things in and out of the Canyon), and I grabbed myself an expensive glass of lemonade, which was a lovely change…after all of that, it was on to the Colorado and the ascent would start up the South Rim, 9.8 miles.

The smile would fade within 5 miles – LOL – This was about to get REAL, VERY QUICKLY!

The walk across the Colorado was amazing!!! I think it may have been one of my most favorite viewpoints in the Canyon. Kim and I were feeling really good at this point, no problem, we can do this…and then the last 4.7 miles were upon us and things were becoming challenging (by the way – there are no warning signs on the North Rim – there are warning signs all over the South Rim due to the amount of tourists that visit). I did not take many photos from the Colorado up to the top – my energy needed to be reserved for getting out.

We walked through trails of sand, water, mud and rock…along with makeshift stairs. The last 3 miles were grueling, with the last 1.5 miles being the worst (i cannot explain how challenging it is, it’s a complete mental game, because your body is pooped!)…the tourists could tell we were pooped and after the .9mile mark we’d run into several asking if we were “coming back up from going to the river”…the look on their faces when we said “no, we started at the North Rim” was one of amazement – several told us we could do this and were so encouraging as we asked about how much further did they think we had, and the lovely woman at the top who took our pic, was so nice, she got all different angles for us without having to ask once she’d found out what we’d accomplished- only 1% of the visitors to the Grand Canyon actually see the Canyon the way we did.

At what point did I know I wasn’t going to be able to make it back across?? Somewhere between the 3 mile and 1.5 mile mark – you see, the joint pain I get from chemo with extreme activities (an after effect that may eventually go away with time), had set in by this point big time. I was using my hiking sticks to support a lot of my weight, and it literally felt like I had a knife in the side of both of my knee joints. If you’ve had chemo, you possibly know what I’m referring to. I knew it would take up to 5 days for it to resolve itself, and for me to go back in the next day was something I shouldn’t consider since the only way out of the Grand Canyon, is to do so with your own two legs – “going down is optional, coming up is mandatory”.

From our starting point to the end, this lady kept pushing me the entire way – Kim has been there to pick me over the last year, and followed me across the Grand Canyon so I wouldn’t go by myself!

13 hours later, and I’d crossed the Grand Canyon from North Rim to South Rim, 6,000 feet in elevation down to the Colorado, 4,500 feet in elevation up to the top of the South Rim, just over 24 miles total…it’s something I never thought I would have been doing a year ago the day I started the hike, as I was struggling to pick my head up off the pillow after treatment #5. The ladies that went on this trip with me are special for one reason or another – each holds a very important place in my heart.

At the top of the South Rim shortly after completing the Rim2Rim

Will I do it again, you bet I will! Do I think I’ll ever be able to do the full Rim2rim2rim, honestly, I’m just not sure…and I’m not one to say “no”, but at this point in time, my body can only handle a Rim2rim and I’m MORE than good with it! It was a trek of a lifetime and one that I plan on doing several more times, because it was THAT amazing!

**this is not something to just go and do – extensive training, preparation and research is needed before taking on a rim2rim – it is highly discouraged by the park due to fact that you have to get yourself out of the Canyon yourself**

Today We Use Our Voices As One – World Ovarian Cancer Day 2018

May 8th, 2018 – World Ovarian Cancer Day – The One Day of the Year We All Raise Our Voices 

Last year, I had no idea how to go about doing this, but I found a small group of ladies who were willing to share their story – this year, I wanted to do it just a little different, with a larger group of ladies.

I asked them for a couple of things – age and stage of diagnosis, where they are in this whole ovarian cancer survivor fight, and what they’ve either learned from all of this or what they’d want you to know about ovarian cancer. Without fail, you’ll notice three things we all felt the same about – these are the things we want you to know:

1. It can happen to anyone – ovarian cancer doesn’t discriminate – so please stop looking at our symptoms based on our age, just look at the symptoms.

2. Your annual exam and pap smear do not screen for ovarian cancer. To date, there is NO SCREENING TEST for ovarian cancer.

3. These are the main things most women experience as symptoms for ovarian cancer: Bloating, pelvic/abdominal pain, inability to eat/feeling full quickly, changes in bowels, irregular menstrual cycles, and needing to wee a bit more often. If you have any things that persist for longer than 2-3 weeks, regardless of if they are signs of ovca, go to the doctor.

The one thing I wish someone would have done, that was around my age, was to use their voice in a manner in which I could have heard it, so I would have known ovarian cancer could have happened to me. I had no idea what to look for, I had no idea it could happen to me, but what I did and do know, is that the statistics are grave for reasons they shouldn’t be! One of them being continual misdiagnosis for younger women. No woman should have to be in the fight for her life because somewhere along the way she never heard the word “ovarian cancer”, or if she did, that she wasn’t fully informed about what to look for. Every woman in the world is at risk of developing this deadly disease!

But enough from me – here’s what some badass ovarian cancer survivors want you to know about them!

Andrea (Texas) – Diagnosed at age 37, Stage Ic – the cancer had spread to my abdominal fluid, so I was treated aggressively with chemo. Since my mother-in-law was a survivor, the symptoms were on her fridge, I knew what to look for and went straight to me OB/GYN. Both of my ovaries were effected and I would undergo surgery for a full hysterectomy. I’ve been cancer free for 6 years!

My mother-in-law was not as lucky, she was misdiagnosed for 5 months, being diagnosed at Stage IIIc when they finally figured out what was going on. She had no evidence of disease for 5 years, but had a recurrence, which she fought hard for another 5 years – this past October she passed away.

My hope is that all doctors take these symptoms as seriously as my doctor did, so it can be caught in the early stages.

Brittany (Texas) – Diagnosed at 28, low grade and high grade ovarian cancer, stage IIIc.  Currently doing immunotherapy through a clinical trial at M.D. Anderson.

I wish women, particularly young girls, knew they aren’t being checked for OCVA in their annual exams! I wish they knew what the symptoms are so they can recognize it & be diagnosed EARLIER…because advanced stage OVCA has very, very tough odds. But I also want EVERYONE to know joy can be found in even the toughest of circumstances! Jesus makes beauty from ashes & brings victory through the impossible!
(If you like Brittany’s hat, please go to https://www.monogramminglife.com/change-your-altitude-trucker-cap/ – all profits are going to Colleen’s Dream, an organization both Brittany and myself support!)

Carmen (Spain)- Diagnosed at age 49, Stage II, 10 days after my mom died due to ovarian cancer. I am BRCA 2+, I had 6 sessions of QT, and 3 interventions in 1 year, one of them one more bilateral prophylactic tectonics with prosthesis. I am now well and this month I have to review I did not have any symptoms, I was operated on for cysts and my CT and tumor markers were good, it was found in pathological anatomy

 

Charlotte (Canada) – Diagnosed at age 34 with Stage IC ovarian endometriod cancer – at the end of April I celebrated my one year anniversary of my completion of chemotherapy.

Things I’ve learned:

We need learn to listen to our bodies and advocate for ourselves if something doesn’t  feel right.

Women (and men) need to stop being afraid to talk about our reproductive health. The “lady parts” have names and functions and are important part of our health!

Caregivers are crucial. If you are stubborn like me you may hesitate to let them help, but let them. It is as much for you as it is for them. Everyone wants to do something tangible in times of illness or loss.

Doctors and Health Care aids are amazing, but nurses are angels on earth.

Recovery can take way longer than expected.

Hot flashes SUCK!

Not having to shave is sweet, being bald can feel great and wigs are awesome…but losing your eyebrows is the worse and eyelashes really do protect you from getting stuff in your eyes.

Above all, I want people to know that the cancer fight isn’t easy, and sometimes the hardest part is after the treatment is over and you are allowed to reflect on the journey your body, heart and mind has gone through. Allow yourself to mourn the parts of you that you may have lost, but eventually also allow yourself to celebrate your survival. When over 50% of women diagnosed with the disease don’t make it passed 5 years, it is truly an honor to be a survivor. Finally, that statistics needs to change…with days like World Ovarian Cancer Day, I’m hopeful that awareness and funding will increase and so will the number of teal sister survivors.

Kandise (Nevada) – Diagnosed at age 55, Stage III. My last treatment in September 2017, and I’m currently N.E.D.

I wish more women were aware of the symptoms and that your pap smear doesn’t screen for this disease.

 

 

 

Kelly (Oregon) – Diagnosed May 20, 2016, Stage IIIc at age 56. I am currently N.E.D. (No Evidence of Disease), 16 months out from my last treatment! I want women to not write off symptoms like persistent bloating or constipation. It’s not good if it lasts more than two weeks.

I wish I had known ANYTHING about Ovarian Cancer. I knew nothing.

Kristen (Australia) – Diagnosed at age 21 with Stage IIIC Low-Grade Serous Ovarian Cancer. Still in treatment 4 years later, recurrences are the worst!

I’d love for people to know the signs and symptoms of ovarian cancer and that there’s no screening test.

 

 

Mandy (Kansas City) – Diagnosed at 35, stage Ic endometroid tumor. Currently just finished round 4 of chemotherapy. I wish doctors had a plan in place for monitoring for ovarian cancer and made patients aware of symptoms and did not blow them off. Sonograms are easy and relatively inexpensive.

 

 

 

Natalie (Trinidad) – Diagnosed at 37 with stage IIIC ovarian cancer. I had just lost my father a few months before to stage 4 colon cancer. I was totally devastated. I am now 41 years a have had three recurrences.

I somehow feel much stronger because of this journey. I have the best support system in my daughters. I am still on maintenance treatments, but, I am still here!

Paula (Illinois) – Diagnosed at age 54, State IIb and I’ve been N.E.D for 18 months! I wish others knew that there was no screening test in place for ovarian cancer.

 

 

 

Randalynn (me! St. Louis) – Diagnosed at age 36, stage IC and endometrial cancer, N.E.D. 10 months. My symptoms disguised themselves as “stress related” things – it wasn’t until I would end up in the E.R. with labor like pains I would find out I had a cantaloupe sized tumor on my right ovary, but still they thought it was nothing more than a dermoid cyst. I wouldn’t find out I had ovca until a week after surgery to remove the cyst.

To those of you reading this who may be newly diagnosed, what seems impossible and scary in the beginning, is something you will be able to get through – you’ll find more strength than you ever knew you had. I wish more women knew they weren’t screened for ovarian cancer in their annual exams – there is no screening test in place. This can happen to anyone – I have no genetic reason, or family history to explain how I ended up with both primary cancers at the same time.

To those of you who are stepping out into the world “after” – I think it gets easier, but I’m still trying to figure it out. I’m not really sure you ever really figure out how everything works after being diagnosed with cancer – but I’m hopefully that a “new” and “better” me emerges from this whole thing, with an understanding that although my life might not be like it once was, due to experiences, it doesn’t mean that I still can’t do all the things I may want to, I just may have to do them in a different manner.

Shaylee (Kansas City) – Diagnosed October 2017 at age 23, after being told TWICE I was “too young” to have cancer. Stage: IIIC low grade serous ovarian cancer.

What I thought then: cancer was going to rob me of any & all opportunities & I’m gonna immediately die at a young age.

What I know now: cancer does take a lot, but if you dig deep enough you’ll find you can gain SO MUCH MORE. My entire perspective on life has changed & now I know what truly matters. Whether I have 5 months or 50 years left, I’m able to live each day to the fullest. It’s possible to SURVIVE & THRIVE, even when diagnosed young or in a later stage.

Shellie (Grand Rapids) – Diagnosed April 2017, with High Grade Serous Stage IIIc at age 40. Last chemo January 2018

What do I want people to know- Cancer is not a death sentence. Many people do survive. Also, just because you live a healthy lifestyle you are not immune from getting cancer.

My Grandmother was diagnosed at age 33, type and stage unknown, passed away 11/25/1963

What she would want people to know- Listen to your body when something doesn’t feel right go to the doctor keep asking until they figure out what is wrong with you. She went to the doctor for months and was misdiagnosed. Treatment was not available when the cancer was discovered. She died within nine months of her initial doctor visit. Be your own advocate.

 

 

 

Sherry (Florida) – Diagnosed at age 49, Stage IIIc, currently N.E.D for the past 3 months, am awaiting my three month scan on May 9th.  Please remember this is no reliable test for ovarian cancer – listen to your body.

 

 

 

 

Shirley (Florida) –Diagnosed at age 40 with Stage IIIc, high grade serous carcinoma. I wish there was more awareness of ovarian cancer….because I had several symptoms, but it was nowhere on my radar of things that it could be. I thought for sure the bloating and fullness was from the “fun foods” of summer and vacation, I have had reflux for ages, so I chalked it up to it “flaring up” so then when there was finally pain.

I waited until it was pretty severe, and still thought it was a digestive issue before heading to ER. Awareness just isn’t as abundant as with many other cancers…and sadly the stages of diagnosis are usually so advanced!

Stephanie (Vermont) – Diagnosed at age 37 with stage IIIc ovarian cancer and stage 1 uterine cancer. I want the medical world and people in general to know this can happen to anyone. I didn’t have any family history, nor any other risk factors, but here I am, a cancer survivor!

I’m in remission with an type of ovarian cancer that can’t be cured – never give up, never quit!

 

 Vicki (Colorado) – Diagnosed at age 37, stage IIIa. N.E.D – Currently 40 years old, about to have my final (fingers crossed) reconstructive breast surgery (Vicki is a previvor, with her chances being elevated to develop breast cancer) and preparing mentally for the adoption process.

Ovarian cancer can happen to anyone! It’s is life changing. Signs can be as simple as bloating – I was diagnosed with mild IBS, and in reality, it was probably my ovarian cancer…

Vivian (Pennsylvania) – Diagnosed at age 52, stage IIIc clear cell high grade. I completed 12 weeks of chemo but found I was platinum resistant. We found an immunotherapy trial and I was on those drugs for 11 months. I developed severe arthritis from the drugs and had to stop BUT my scans cleared up and I’ve been N.E.D since Sept 2017!

Currently getting scanned every 3 months. I wish I would have known the symptoms of OC and I want people to know your yearly pelvic exam doesn’t detect it. That is why I try to raise awareness. I also have NO cancer in my family and I was tested for several cancer genes and I’m negative for all of them! It can happen to anyone!

Zena (Manchester, England) – Diagnosed at age 42, Low Grade State IIIc Ovarian Cancer. At first I was treated with chemotherapy for high grade, but we soon found out it wasn’t working and I had low grade. If you have abdominal swelling for unknown reasons, go to the doctor to have it checked out.

 

For more information on World Ovarian Cancer Day, please visit –http://ovariancancerday.org